My question is, “Why do all these beautiful blogs showcase only the first few years of life?”
Each of these newbie bloggers has the same theme in common. They start with a beautiful and sentimental birth story then share the horror of receiving the diagnostic news. Then they go on to share all the "firsts" that happen because each milestone is huge. There are colorful photos and videos with sweetness written all over them showcasing sitting independently, crawling in cupboards, eating with a spoon, standing in the middle of a room on their own, taking their first steps, and finally the first word. These portrayals melt your heart and bring out such goodness and pride in the journey.
The hundreds of cutie patootie, angelic, wonderful, loving blogs simply - END.
Let’s be real here. Let me ask you this, “How many blogs are you currently following that highlight 6 to 15 year olds with Down syndrome?”
Ever wonder why?
It’s because once school starts, reality starts.
Reality hurts in so many ways because it’s your first glimpse of what your child looks like in a direct side-by-side comparison to 29 "normal” peers. As a parent lots of things stick out.
1. Not only is your child the shortest in their class, they are the only one not potty trained yet and possibly wearing a poufy pull up under those clothes.
2. And the clothes they are wearing are toddler clothes because they aren’t tall enough to get out of the Mickey Mouse themed sizes.
3. And the shoes, the ones that are two sizes too big to accommodate the braces that must be worn on their feet which provide the stability needed to help your child have a chance at even remotely keeping up with their peers when walking down a hallway as a group.
4. When you go to see your child at school you have to quickly respond to questions like, “Why do they look different, what is wrong with their eyes, why can’t they talk, why does their tongue hang out?” Try answering those questions on the fly with charisma. As if these physical observations don’t hurt enough, just know those are the superficial and obvious ones. The more detailed and hurtful ones have yet to come.
For example, during your child’s first year of school you as a parent will be presented with reports and data showing your child’s delays in communication, following directions, staying on task, self-help skills, cutting, writing, coloring, running, hopping and the long list of all the things your child can’t do drags on…
From the core of your being you will have hoped that all the time, therapy, and dedication you put in to your child from the day they were born until school age would have gotten them farther than preschool - before falling behind their peers. My point is, this stuff is hard to swallow, no matter how big or small this is in your tier of importance.
And while you’re sinking into a depression realizing for the very first time just how far behind your child is, your school might also agree and share all the things they can’t afford to do to help them. That is the reality and those are the blogs that parents need to read about. Just how difficult and emotionally draining it is on yourself and your family to fight year after year for a free and appropriate all inclusive education for your child. And when I say emotionally draining, I am talking about the hours you spend reading the literature and the research, the books on how to have a successful IEP, etc... Forget reading for enjoyment. That’s the truth that needs to be shared in these blogs.
Now we all know that once your child is in school, that’s when the inviting classmates to birthday parties start to become popular. I heard from a parent this week that invited several general education students or otherwise known as “normal” kids to her child’s birthday - and nobody responded. NOBODY! Where was the blog sharing the reality of that story? My point is… who wants to mend that little girl’s broken heart? This mom will do it.
I recently had a mom tell me she is emotionally drained because she feels like she has been raising a toddler for 9 years. Toddlerhood, remember those days? That is when you did mental checks involving choking hazards every nine seconds. You would make sure there were no quarters or fingers were being placed in outlets. You couldn’t sleep at night until you checked three different times to make sure the front door was locked in case of an accidental escape. Toddlerhood was exhausting. Now, imagine doing it for 9 years straight. I envy the parents who have normal children only deal with these things for age appropriate times. Special needs parent’s deal with the mental strain of dealing with toddler behavior for decades. It’s exhausting. Where is the blog sharing that reality? I am a parent of both a special needs child and normal child and am speaking from experience when I say raising my son is without a doubt easier.
I recently had my advocate tell me that things were only going to get harder. Seriously? I truly felt like I had been through the worst of it, but as I thought about what is to come, more fears sunk in. The bike riding years and the adolescent crush years will also be difficult because time and time again your child will come to mom with tears in their eyes asking you, "Why can't I ride without training wheels or why can’t I like that person?" Who will break the news? This mom will.
Let me share when those moments arrive, that's when you will realize that throughout all these years, the confidence you have given your child to tackle the world just might not be enough. They will soon realize they are different, they won’t fully understand why, and for reasons beyond their ability some things just won’t happen for them and there isn't a darn thing you can do a thing about it to ease their pain. Where are those blogs?
Therapy sessions verses playdates. That is one I still am dealing with. Summertime hits and the world takes a breather while my little girl only works harder. All so she has a remote chance at starting the next year close to where she left off. It’s not fair and it hurts like heck to see your child have to work so hard at every.single.thing. they do.
The empty nest fear still frightens the daylights out of me. Have you been to the grocery store lately? You don’t see a Down syndrome adult shopping alone. Many are tagging along right next to their parents. You see them anywhere from 30, 40, to 50 years old. Where are the cute blogs when your child is 36 years old, still living with you, needs reminders, meals, is missing out on college, house buying, marriage, children, and so on. I know there are new and different services available out there, but the reality is even at 50, this mom will still be the one writing the check for the services they need. Where are the narratives telling me how beautiful that part of the journey is?
And then there is goodbye. You know a parent's worst nightmare is having to say goodbye to their own child. I will have known life before my child and will have to learn to live life without my child. It chokes me up every time and takes my breath away but the reality and research has time and time again stacked those odds against me proving that the likelihood of this happening is extremely high. I do understand the risk of any child passing is a risk, but when odds predetermined and pick your child, the journey isn't as carefree and beautiful as initially portrayed. Unfortunately, that cute little happy blog your following, enjoy it while you can.
It hurts, every day hurts, and the pain of this reality never really gets any easier for both my daughter or myself. There is a saying floating around Facebook about walking a day in my shoes, and not many people would make it. I wouldn’t wish this journey on anyone else.
I know my blog may be viewed to some as hurtful. It is raw and I can tell you I am as truthful as they come. I know I will offend many people by expressing my fears, but it is also my hope to serve as the voice for many more that are too scared - or ashamed to share.
And that part, I am proud of.
You can criticize my viewpoints, in fact, I welcome hearing your perspective, but you can’t change the reality that I personally face on a day to basis. I do realize not everyone’s story is the same but this story is mine…..my story…. as it unfolds…on this very day. Tomorrow may be brighter but in the meantime I wanted to share with the world the darkest hours and what spins in this thick brain of mine.
Now, I promise you, I am not an entirely pessimistic person. I always try hard to share the bad followed by the good.
And the good is not just good, it’s breathtaking.
While the reality my family faces isn't always beautiful, my daughter, Maddox Lucille, now she is beautiful. And she is worth every last lingering bit of fight I have in me to give her a chance at succeeding at school, being invited to birthday parties, living on her own, and surpassing the medical odds. She has no choice but to succeed in this world because she was born with my passion and determination.
And yes, I promise to blog the entire journey throughout the good, bad, and beautiful. You bet I will continue to share my story with utmost passion and honesty and I hope those traveling a different journey will be respectful of that. Thank you for taking the time to listen, appreciate, and attempt to understand as I share today’s fears with the world.